Fibromyalgia Action UK
38,655 members50,914 posts

why is it so hard for us

i have had fribo for a long time now and all the other people on benfits that take the p**s but when we try and clame we struggle to get it .i dont find it fair i got told by benfits that i should go to work i have had two jobs since and cant do it at all i come home crying in so much pain that i just want to die then get sined off by the doctor again i have put a new clame in for benfit it make me so p****d of that they dont fully undrestand fribo at all

[Edited by Admin - some words cause offence to other members and we have to be careful about this to keep in accordance with our Guidelines too. The words have been asterisked out to avoid possible offence.]

4 Replies

If I,m honest in my opinion it's the varying degrees of how fibro affects us that makes it so hard when applying for benfits etc. after my initial diagnosis I had seven good years where i worked full time did exercise and had a baby ....then went downhill.. Plus I Know people say its good celebrities come out and say they have fibro ... But then the people who asses us who in all possibility know very little about fibro.....think ....oh Morgan Freeman has it and he works so why can't miss/ mr x here work.

I hope you get some pain relief from your GP as well as being signed off

VG x


It's certainly very true that the way fibro affects us is very variable. Some people just feel tired and achey, whilst others have severe and incapacitating pain, and of course there's the fogginess ...!

Most people have good days and bad days - I know I certainly do - and the bad days can be truly distressing.

We shouldn't ever worry about what people think - it's none of their business, and if your doctor finds you unfit for work then the benefits people will just have to believe it.

I lost five good jobs in a row because I couldn't physically fit the job description, though I tried very hard indeed. I used to give myself a very hard time, because I didn't understand what was wrong, and just thought I was being lazy and forgetful!

I gave myself constant pep talks, but finally realised I was actually ill when I worked in a psychiatric hospital. One of the doctors I worked with watched me struggling and took me aside - he knew about fibro and diagnosed me there and then. I guess I was lucky, but at that time few doctors would accept fibro as a physical illness, and we were still admitting patients for psychiatric care!

Fortunately, my doctor friend was aware of the complexity of the disorder and realised that though CBT and relaxation therapy, plus anti-depressant medication could often help fibro, it was a long way from being the complete answer

I'm retired and pensioned now, so I no longer have to fight for benefits. So far I haven't had to claim DLA, as I can mostly manage to get around and also have some help from my family - I shall cross that bridge when I absolutely have to!

Just remember that other people's opinions are irrelevant - it's what you feel like that matters, and we must all fight for that to be recognised.

Don't give up, Stoker - it takes practice to learn to live with fibro, and you will get there!

Love from Moffy x


"i have had fribo for a long time now and all the other people on benfits that take the p**s but when we try and clame we struggle to get it "

Don't believe all the Government & media hype with their strivers v scroungers/ skivers/ shirkers rhetoric about fraudulent claims etc, they do it to divide and conquer - the actual rate of fraud in all sickness/disability claims are around 5 in every 1000 (ie 0.5%).

It's not just fibro, being awarded ESA/DLA has always been hard slog regardless of what illness/disability the claimant has (if they can find someone in a coma fit for work what chance is there for the rest of us!). Now they're making it even harder to get with new criteria guidelines being brought in over the next few weeks.

There are also more changes coming into the Work Capability Assessment, which ATOS admitted were designed to get people off ESA. Assessors can already assess claimants with an imaginary wheelchair to assess whether or not they can "mobilise" and soon this “imaginary test” will be able to be used for many more aids (including guide dogs and prosthetic limbs!). Needless to say that this means thousands more people could be judged as fit to work, without being consulted, on the basis of an “imaginary” aid they don’t own or may not be able to use!

It gets worse. Even if returning to work may clearly put you at risk, these changes will mean you can still lose your disability benefit – as long as the assessor believes that trying a new therapy or treatment might reduce that risk. There’s no need for evidence that the treatment will help: you will lose support either way, making it much harder to manage if the treatment doesn’t work as hoped – let alone if it ends up making things worse.

Just a pity there aren't the imaginary jobs out there that would be suitable for those with imaginary limbs, treatments or therapies.

Esther McVey, Minister for Disabled, was up before the Work & Pensions Select Committee last week to explain some of the changes that were being sneaked in to, what had been left out of the PIP regulations due to come starting in April. She was also questioned about what was ignored from the results of the Consultation that was carried out last year. If anyone has the time to watch it makes interesting viewing:


Hi guys! I thought I'd share with you what I was told by my benefits adviser... Are you ready for this?? ' my dad has RA and is 71 and still working and as you have 25 working years left you'd better get on with it' I reported her!

as for DWP and ESA we are all supposed to make a miraculous recovery after being on benefits for 365 days!!! Nice to know there's light at the end of the tunnel??!

I totally agree with you. And i hate the fact that i cant work and have to be on benefits and we struggle on a daily basis but you can guarantee that when we go for the assessment we will be on a good day! We cant and don't fake a bad back then go to the gym! Its so unfair!

ohhhh look you've started me ranting its ok.... Got my control back!! Any way i need a snooze after this!

night night zzzzzzzzzzz

Louise x


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